January & February 2015
Newsletter

Welcome to Rajbhavan; through this ramp

On 26 January 2015, the Republic Day of India, the Honourable Governor of Kerala, P. Sathasivam, as tradition demands, was “at home” to many important people in Trivandrum – ministers, senior officials, social and literary luminaries, etc. The guests included Ashla Rani and George Thomas.

On 25 November 2014, Ashla and George had approached the Honourable Governor to request his support in making Thiruvananthapuram a wheelchair-friendly city. He promised to do what he can and said that the least he could do was to make his official residence, Rajbhavan, wheelchair-friendly. We hear that he had a meeting with his staff the same evening and gave a deadline. On 24 January 2015, the Honourable Governor inaugurated the wheelchair pathway at the Rajbhavan, and he invited George and Ashla to be present at the occasion. Apart from the ramp to the main building, required slopes to the sidewalk are also provided.

On Republic Day, Ashla and George did not have to be carried up the steep steps by several people. They could move their wheelchairs themselves and meet with the guests. The Health Minister, the Chief Secretary, the District Collector and many others personally greeted them.

With this sort of beginning, we are sure that their dream of a wheelchair-friendly Trivandrum will come to fruition.
We thank you, Your Excellency. Few leaders would have this kind of sensitivity about a request from a couple of humble individuals.

Seven wheelchair-bound people and twenty-five volunteers represented Pallium India in Run Kerala Run on January 20 at Trivandrum, an event organized in support of National Games Kerala 2015.

On January 20 at 10.30 PM, Ashla Rani, Preetha, Sindhu, Shameena, Jyothi Kumar, Sameer and Radhakrishnan on their wheelchairs joined the marathon from Eanchakkal to Chakka, demonstrating yet again that if only we allow them to, people on wheelchair can be major contributors to society.

Pallium India takes care of over 60 wheelchair-bound people in Trivandrum and with them, has been working towards making Trivandrum a wheelchair-friendly city.

On January 15, about 60 patients, who are ordinarily bed-bound or wheelchair-bound, and their families got together at Shankhumugham beach to celebrate the State Palliative Care Day. Volunteers from Mar Baselios College and others travelled far and wide to transport wheelchair-bound patients, often far away from motorable roads, and brought them for the festivities.

Mr Jyothi Kumar, a wheelchair-bound artist, inaugurated the day’s events in presence of several visiting dignitaries. Many patients and family members performed for the others. The volunteer group called ‘Disha’ performed cultural activities.

The patients talked, exchanged experiences, enjoyed a puppet show performed by Shri Sunil Pattimattam, as well as dances and music before spending some time at the beach. Some said it had been many years since they had the pleasure of seeing the sea.

A group of eleven students from Iowa University in the USA and their two professors were among the volunteers helping the patients and families.

The get-together acknowledged the society’s responsibilities towards people who are confined to home because of disease.

Dr Rajagopal has been nominated by CNN-IBN for the “Indian of the Year” Award under the Public Service Category. To vote for Dr Rajagopal as your ‘Indian of the Year’, please post ‘I vote for #iotyRajagopal as CNN-IBN Indian of the year 2014’ on your Facebook Timeline. (You can also visit www.facebook.com/indianoftheyear and click on “IOTY 2014 Nominees” to cast your vote.)

Rajesh, who is seen here with his wife Mini and his two children Adityan (2.5 years) and Abhishek (10 months), has a congenital muscular disorder, which unfortunately, will progressively worsen his muscle power. As of now, he is unable to use his limbs, and needs support for all activities of daily living. His wife cannot work because the children would have no one to care for them.

Several social support schemes have been started by the government in India in the last few years. Rajesh got the benefit of some of them and the net result is that he is now in danger of being thrown out of his home. We do not know of any poor homes that would take in such a whole family and care for them. Where would they go? We fervently hope that someone will take the trouble to analyse what has been done and to measure the outcome.

Pallium India is offering him what little support we can. Rajesh desired that we should give visibility to his plight and hence, on his insistence, we are showing his picture here. Rajesh hopes that someone will come forward to help till the children are grown up enough to go to school so that Mini would have some hope of finding some employment. Rajesh, we admire your courage and your ability to smile even in the face of adversities. We promise to continue to do what we can and wish you and family the best.

It is amazing how much suffering can result from a bureaucratic action that comes out of sheer misunderstanding of facts. The ban on Dextropropoxyphene, taking away the only inexpensive Step II analgesic, was an action that was based on withdrawal of the drugs in the UK, the US and in European Union. Each country had a different reason for banning it, and India followed suit. The result was a huge burden of suffering. The only other Step II opioid available to us is about ten times more expensive.

Rotary Club of Trivandrum and Freemasons of Trivandrum (in association with Pallium India, Indian Medical Association Kerala, Indian Association of Palliative Care Kerala and Indian Society of Anesthesiologists Kerala) are organizing a public meeting on February 2, 2015.

Dr Katherine Pettus, Ph.D., will deliver a talk “On Access to Palliative Care – A Human Right”, and the public of Kerala will discuss the issue. Dr Katherine Pettus serves as the Advocacy Officer for Palliative Care and Human Rights in Geneva and also as IAHPC liaison to the International Drug Policy Consortium and the Vienna NGO Coalition on Drugs.

Falls from trees and from construction sites, road traffic accidents – young people in their prime of life get paralysed for life. Understandably, their life turns upside down; their “story is broken”. The sensitive ones among us give a thought to their disability, the physical discomfort, to their financial problems and to common social issues.

FOKANA, The Federation of Kerala Associations in North America, had their annual convention at Kottayam on 24 January, 2015. It was a day full of activities. In the picture, you can see Dr. M. V. Pillai, a great humanist, writer and social activist and an American of Kerala origin, speaking at the health seminar on that day.

FOKANA very kindly gave a handsome donation to Pallium India. Thank you very much, Mr John P John (President), Mr Vinod K.R.K (Secretary) and all at FOKANA for your kind support and your humanity.

The formation of the Pain & Palliative Care Society in Calicut in 1993 marked a historical event in health care, starting in Kerala and now gradually spreading nationally and making its impact in the rest of the world. A group of seven people had come together to form the organization. Of the seven, the first to leave us for Heavenly abode, many years back, was Sri Thikkodian, a noted and gifted writer.

Now, another of the seven humanists have left us. Dr Molly John, one of the founding members of the Pain and Palliative Care Society, died on 7 January 2015. She had been living with cancer for at least fifteen years, and despite the cancer spreading through her bones and to her lungs, died in reasonable comfort, lovingly cared for by her only son and daughter-in-law.

A reservoir of great spiritual strength, she enriched and touched many lives. We shed a silent tear at the loss of this great humanist.

Telephone: +91-9746745497 or E-mail: info@palliumindia.org

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

Dr Bishnu Dutta Paudel is a dynamic pioneer of palliative care in Nepal and the recipient of Cancer Aid Society’s South East Asia Palliative Care award in 2012. His work with the Pain and Policy Studies Group in Madison-Wisconsin has changed the face of pain management in the country.

Read the article by Dr Paudel and colleagues, “Opioid Availability and Palliative Care in Nepal: Influence of an International Pain Policy Fellowship” published in Journal of Pain and Symptom Management.

Imagine if respected members of the community could help teams of doctors and nurses do effective home visits to care for immobile or terminally ill patients. Volunteers at Pallium India have done exactly that in the state of Kerala in the south of India. Pallium India provides inpatient and outpatient palliative care for seriously ill patients and is currently hosting our group from the University of Iowa.

Volunteers at Pallium are respected and crucial members of the team before, during and after the home visit. First, they make sure that the vehicle carrying the team does not lose precious time trying to find the right house. Getting lost can be demoralizing for a team, but more importantly, it robs time from the patients and families.

Dr Ann Broderick was part of the thirteen-member group from Iowa University who visited Pallium India for three weeks during December’14 – January’15. The group included Pallium India’s dear friend, Professor Jo Eland, and eleven students from pre-medical, nursing and public health courses. In addition to attending classroom sessions, they travelled with our home care teams and helped in our outpatient clinics (and even helped us shift our inpatient rooms, organize our library etc!).

When Pallium India’s home care team visits the Cheshire Home at Trivandrum periodically to care for a few of the wheelchair-bound people who reside there, they also have the pleasure of meeting up with a celebrity who is not wheelchair-bound. Sarasu is not wheelchair-bound, because she is not even able to sit up. She had polio myelitis at the age of five and since then, has been living in this home. And being creative.

An author of numerous books, she does all her writing while lying on her stomach. A documentary based on her life recently won a national award – “With a Life Being”.

Sarasu recently celebrated her birthday. Sarasu, we wish you many happy returns of the day and to a life which continues to inspire others.

Pallium India apologizes for the inconvenience caused to anyone who was planning to attend our six weeks certificate courses in February 2015. Due to unavoidable demands on the faculty’s time and clashes of schedules, we have been forced to cancel the courses in February 2015.

With World Cancer Day falling on February 4, here is a look at the benefits of palliative care for cancer patients and their families.

Palliative care is defined as a specialised, multidisciplinary medical care meant as an additional form of treatment for cancer patients and their families to help cope with the issues arising out of cancer diagnosis and treatment.

Training the Next Generation of Doctors in Palliative Care is a Key to the New Era of Value-Based Care

The World Health Organization defines palliative care as care that,

improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.

This should be how all medical care is defined, but unfortunately, it is not. With an aging population and chronic disease on the rise, team-based palliative care may well be the defining issue in the future of healthcare.

When I was training in medicine, we were in the “do everything always” era of medical education. New science and lifesaving technology offered us the ability to prolong and save human life as never before. Specifically my specialty field of heart and lung transplantation was quickly evolving, making what previously seemed like science fiction a reality.

The European Association for Palliative Care (EAPC) is researching the role and motivation of volunteers in hospice and palliative care in Europe. This survey is part of that research and is carried out as a part of the work programme of the EAPC’s Task Force on Volunteering in Hospice and Palliative Care (co-chaired by Ros Scott and Leena Pelttari).

Katharina Pabst and Lukas Radbruch, members of the EAPC Task Force on Volunteering in Hospice and Palliative Care, invite all volunteers working in hospice and palliative care services in Europe, and those involved in managing volunteering services, to contribute to the survey.

Nobody wants a protracted, dehumanised death: why is it still so easy for doctors to ignore a dying patient’s wishes?

Antibiotics, defibrillators, feeding tubes and ventilators are lifesaving tools that sometimes become weapons to prolong life against our will. None of us can escape death but some of us want to shape our final time on earth. We don’t want to live for years in a nursing home rendered unconscious by late-stage dementia; or brain-damaged by strokes; or on and off ventilators with recurring pneumonia, growing so frail we lose the choice of an unfettered death at home.

Jeanne Erdmann writes about Advanced Directives and end-of-life wishes, and how, very often, these directives are ignored, no matter how carefully they are crafted.

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PARTING SHOT

Dr Mark Boughey, an internationally acclaimed palliative care physician from Melbourne, Australia, and Dr Katherine Pettus, a human rights activist, lawyer and scholar, affiliated to the International Association for Hospice and Palliative Care (IAHPC), were two visitors that Pallium India had for a week.

Dr Boughey talked to the team about patient-centred care. Even before he started, Katherine had a question. She asked in surprise, “What is the alternative? Who else could be at the centre, except for the patient?”

Very valid point. Not only Katherine, but every non-medical person would have the same question in their minds. Why say “patient-centred care” at all? Isn’t that obvious?

Well, Katherine and everyone else, strangely, the patient is usually not at the centre of things. It is the disease, too often. Especially in the last half-century, the introduction of technology and the growth of the healthcare industry have resulted in disease being the focus, at the cost of forgetting the patient.

Frances Carman, our visiting nurse faculty member, pointed out another aspect. Nurses often get so task-oriented that care of the patient becomes subsidiary and the tasks to be finished take the centre.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.